POTS & hEDS/HSD
I Get Dizzy Standing Up, But It's Not POTS - What Else Could It Be?
None of us writing this are doctors. This page collects what the published research actually says about orthostatic symptoms in hEDS/HSD beyond POTS specifically, so you have something concrete to bring to a doctor.
POTS gets most of the attention when hypermobile people talk about dizziness on standing, but it is not the only pattern doctors find on formal testing - and knowing which one you actually have changes what treatment makes sense.
POTS Is Common, But It's Not the Only Orthostatic Pattern in hEDS/HSD
A 2020 observational study tested autonomic function in 102 adults with hEDS/HSD using a multimodal approach: heart rate, blood pressure, and baroreflex sensitivity measured during deep breathing, the Valsalva maneuver, standing tests, head-up tilt testing, and sustained handgrip. Abnormal results were common, but they were not uniform. POTS was found in 48% of participants, a separate pattern called orthostatic intolerance (without meeting full POTS criteria) in 25.5%, and orthostatic hypotension specifically (blood pressure dropping on standing, rather than heart rate spiking) in 3.9%.
The study also found that baroreflex sensitivity - a measure of how well the body regulates blood pressure automatically - was significantly different in people with POTS compared to people with the other orthostatic patterns. That matters practically: it suggests these are not just different labels for the same thing, but genuinely different underlying autonomic patterns that may respond to different management approaches.
Read more on the hub page
POTS, Dizziness, and Orthostatic Intolerance in Hypermobility
What to do about it
If you get dizzy standing up but a doctor has told you your heart rate does not spike the way POTS requires, that does not mean nothing is wrong - this research suggests a real, separate category of orthostatic intolerance exists in hEDS/HSD, along with a smaller group who have orthostatic hypotension instead. A formal autonomic function test (tilt table testing is the most direct) can distinguish which pattern you actually have, which matters because POTS-specific treatments are not automatically the right approach for the other patterns.
Sources referenced on this page